River W

28 October 2017

Please do not send small items River can put in his mouth or latex balloons (he doesn’t have an allergy but they are dangerous to him).

Our son River suffers from a life-threatening condition. He has an extremely rare and complex mutation on his CNK SR2 gene. There is no cure!  River will need 24/7 lifelong care and he will never really have friends he can play with or share his life with because he will never have his own independence.

River is non-verbal, but can communicate. He sadly suffers from the life threatening type of seizures, status epileptics, which are a medical emergency. He’s attended resus too many times – first when he was only 5 weeks old. I (his Mum) had to perform CPR on River when he was 2 years old and he is rushed to ressus by ambulance frequently. He also has central sleep apnoea, hypermobility syndrome, sensory processing disorder, autism, ADHD, severe learning disabilities etc.

All we can do is hope and pray our River makes it into adulthood, as we have nearly lost him so many times. We want to make the most of every day we have with him, making special memories and for him to enjoy his life to the best he can. When River is able to he loves going to theme parks, going on fast rollercoasters, watching live shows, farms, zoos, all kinds of days out, he has a real love for life and having fun!

Despite all his challenges, he is such a delightful and sunny boy, so caring and determined to fight everything life has thrown at him, and he is loved by everyone who meets him. River is such an inspiration.

Update 14th June 2021

River is now back at school after 14 months off due to Covid-19 as he got the high risk letter to shelid. Nice to have him back as its his last few weeks before he moves to High school. Unfortunately Roxi-Blue is still off school due to her anxiety and autism. Ocean is back in school now too, but also struggling with getting back into school life and his autism needs going unmet by professionals.

So we had a break away as a family to the seaside camping which was much needed and mentally helped us all as a family,  first time we have ever done anything like that, was hard work for us as parents,  but the smiles made it all worth while and was such an achievement!

Update 26th March 2021

We are all still shielding at home. 1 full year its very difficult now. No school for all 3 children,  no friends.  But we are safe.

Update 5th February 2021

We are coming up to nearly a full year of River not being able to go into school,  to see and spend time with any friends. It’s his last year in primary school and we very much doubt he will be going back at all. He’s been there since he was 2 years old as he got early intervention, so it’s so sad that Covid-19 has locked down so many children’s lifes, but we are safe.  

River got the high risk medically vulnerable letter to isolate so it’s meant his Brother and Sister haven’t been able to go to school either,  because they have additional needs they are offered a school place in lockdown. To be honest, it’s been stressful, worrying, scary and I’ve been very sad, especially now, just want hugs and happy times and freedom for our children again. Having 3 autistic children and being diagnosed with autism myself im beginning to struggle more. But feel guilty to feel this way at the same to because I’m lucky we/my family are still safe.
Everyone here in Post Pals,  thank you for brightening our days with post.

And to ALL please Stay Safe .

Update 7th July 2020

River is doing well health-wise in lockdown, not being able to pick up any bugs. Still having seizures, but managing to stay out of Hospital.
We have been fully shielding due to his condition, received the letter to not leave the house at all, so that’s been hard for River, Roxi-Blue, Ocean and us all as a family now time’s getting on. 
We knew River would be high risk so went into isolation at the beginning of March, it feels like such a long time now! But we would like to thank all our pals for thinking of us and sending things to keep the kids entertained. Keep safe our Post Pal family.

Update 27th November 2019

Still having problems with Rivers low weight, but his understanding and sense of humour has really been developing brilliantly.

Update 1st October 2019

River is taking a new medication to help with his ADHD which had worked wonders for his concentration, so his development is coming on better now which is great news!

He is having lots of little seizures at the moment which isn’t great but better than his very big ones which have caused respiratory arrest and cardiac arrest like the ones he had last year. So all in all, taking each day at a time.

Roxi-Blue, Rivers big Sister is having a difficult time with her autism at the moment so her monthly projects are something she really looks forward to and loves, thank you so much for these. Also Rivers little brother Ocean is facing some difficulties and going through some assessments so its been a very busy time.

I wish I could thank you all individually for the love you show our family, thank you Post Pals for your continuing support, our post is awesome!!

Update 10th August 2019

Well I’m currently lying in bed cuddling River due to him struggling with some bad side effects from some medication. He’s been doing really well on it, but today the dose has increased and he’s having anxiety attacks and doesn’t want to come out from under a duvet with me. But most days River has been doing a little better than he has been and that’s made us all very happy. He’s unfortunately losing a lot of weight which we are trying to control. But on the whole we are living each day to the best we can as a family.

Thank you Post Pal’s for always being there for us.

Update 2nd March 2019

River’s struggling and unfortunately his special school have noticed that since Christmas he’s stopped retaining information and not doing as well. New plans for his schooling is in process. He misses a lot due to his medical issues. His more recent tests (EEGS) show that River is having a lot more seizure activity, so this is more than likely why he’s not doing too good.

We are working closely with one of River’s consultants on different medication plans and changes to try to get his seizures under control. We hope for better days. Our family would like to thank you all for the thoughtful post you send to us. Your kindness and support brings so much excitement and smiles. And as parents reminds us we aren’t alone. Thank you so much.

Update 1st July 2018

River has missed a lot of school recently due to him having a lot of seizures needing to use his seizure rescue medication for status Epilepticus seizures. When he has made it into school he’s been getting shaking and too tired so we have been bringing him home early. But he did get to enjoy his school sports day, he was so chuffed to see us all in his school, he found it very funny and was showing us what he could do as he loved making us smile and praise him! Due to all the seizures,he has had so much trouble sleeping, getting headaches and sickness, and just generally knocking him out of sorts, so as a family we have been taking one day at a time. And when Rivers has been up to it getting him out in the lovely sunshine.
He has been receiving lovely post from his amazing Post pals, along with his big sister and little brother who have had so much fun opening cards, letters, pictures and playing with gifts. We thank you all so much, it means so much to our family, bringing so many smiles when it’s needed. Thank you.

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